Saturday, July 24, 2010

The Autism Gospel - A Name Above All Names

When she was very small, most people handled her by giving her whatever she wanted, letting her do what ever she wanted to do and a lot of space in which to do it. I remember the day our Nursery Director at the church asked me to “come look at this one”. Before I go any further, you have to know that our Nursery Director never needed me for anything. Her years of experience with babies had far surpassed any conventional wisdom I’d even dreamt of having in infant development. So when she mentioned she’d like to drop by the Nursery the next time this little girl was checked in, I made a point to do just that.

The day I made my visit, I found Gillian sitting quietly in a corner with her back to the crowd playing a solitary game with her favorite toy – behavior not too terribly uncommon for a child not yet two years of age. It was the words of the Nursery Staff that caught my attention as I observed: “Not too close or you’ll set her off.” I wondered exactly how bad it could be to “set her off”. This little blue eyed, blonde haired angel couldn’t possibly be the terror everyone feared could she? Then I noticed it. She was bare-footed – in February.

I knew her mother quite well. Her children were always clean and well groomed and I knew she hadn’t merely forgotten the socks that morning. I asked the staff where her socks were and they replied that she wouldn’t wear them. I feebly asked, “So she takes them off?” They replied, “No, you have to wrestle them on her and trust us, it’s not worth it.” Then I realized why they’d asked me to come and observe Gillian. She reminded them of my son Noah, who’d been recently diagnosed with Autism.

If there were two things I had learned about Autism at that point in our journey, one of them was that diagnosis was a tricky beast. (At that time, it was actually only in the most profound of circumstances that a child under five years of age would be formally diagnosed.) The other thing I had learned was that you could NEVER diagnose some else’s child – especially a friend’s. As a Children’s Minister, it was also professional suicide to run around suggesting neurological deficits among our congregation. But as I continued to watch Gillian during the coming weeks, it became apparent to me that she was in need of a lifeline to the rest of the world.

When I approached her mother, she was not only gracious but relieved to hear someone else suggest, “Have you ever wondered…?” As it turned out, Gillian was much like Noah in that she was also non-verbal. No babbling, no cooing, no gesturing or pointing – only earsplitting screams. Unlike Noah, who would avoid conflict and confrontation via the “flight method” (of “fight or flight”), Gillian tended toward “fight”. The only way I can describe it is that it was like wrestling a baby alligator. Her mother and I learned to avoid the bruises by pulling her in close if we really thought she was a danger to herself during one of her moments of frustration. Thankfully, or tragically depending on your point of view, Gillian was worse at home than she was at church. This left her mother with unanswered questions and doubts about parenting Gillian that would scar her soul. Of course, this is true of any of us who’ve been gifted with a child who learns differently. As we go to bed every night the last thought of our weary brain is “did I do enough to help them today?”

It was with no small amount of trepidation that Gillian soon moved up to the 2 Year Old Class. I helped interface with the teachers about how best to approach her. This story is to their credit more than it will ever be to mine. They were flawlessly patient and creative in allowing our “Gilly” her space while also seeking to engage her lostness. Classroom routines that had been in place for years were quietly “tweaked” to accommodate Gilly. And when, suddenly, every 2 Year Old decided to take a page out of Gilly’s book and decline socks and shoes, those teachers patiently removed each pair and lined them with up with military precision outside the classroom door. The days of enduring ministry by those teachers remain in my heart as some of the truest example of Kingdom love I’ve ever witnessed. This often required someone holding Gillian down for a few moments of circle time so she wouldn’t be so afraid of the other children. Procedures such as these can become hazardous to your health. But the uglier it got, the more tolerant they became.

Still non-verbal, Gillian was a handful. She gave no eye contact. No small hint that anything was ever getting through. She wouldn’t be touched. She rarely smiled, and then when she did, not “at” anyone. In case you are wondering, I am not misrepresenting the past for the sake of a good story – her mother and I have often wondered at the miracle we would soon witness in Gillian’s life.

So her faithful mother dropped her off each Sunday morning with an apologetic smile. She tells me she never felt that anyone was judging Gillian’s behavior or her parenting, but that she felt truly sorry for what these people would bear for two hours. And each Sunday as the invitation hymn was sung, her mother would hustle downstairs to embrace those teachers and apologize for whatever had happened. (A “special needs mom” often learns all kinds of tricks and ways of learning to be liked in hopes that it will earn her child the many mercies they need from other adults.) Then one fateful Sunday, the unthinkable happened.

Her mother entered the room as always and began to debrief the day with Gillian’s caregivers and teachers. She was preparing to hold Gillian down in order to get a pair of socks and/or shoes on her feet when Gillian began to pull her by the hand over to the Story Corner. Her mother was earnestly appreciating the teachers and working toward moving in the other direction, but Gillian was insistent. Without realizing what was happening, her mom was coerced by that small force into the corner where Gillian began to adamantly pat a pastel story picture of Jesus from the day’s Bible lesson. The patting became so firm that her mother was forced to look at Gillian’s little hand to see what this persistence was all about.

It was then that Gillian looked up into her mother’s eyes and uttered her very first word – “Jesus”. And she smiled. Then mother held her breath as Gillian said it over and over and over again. Immediately after leaving the classroom, her mother rushed into my office, tears streaming down her face, with the following words: “I don’t care that it wasn’t ‘Daddy’ or ‘Mommy’! I don’t care that it wasn’t me who did it, even after all of this work. All I can think is that the ONE thing that got her through is the ONLY thing she can say – Jesus!”

The Name Above All Names had captured Gillian’s imagination. The Name of the only Beloved Son had so enraptured her neurologically challenged brain that it got through the dark sensory jungle and connected to her heart. And it didn’t happen with highly trained professionals or adaptive therapy or cutting edge technology. It happened because Gillian felt Jesus in the arms and hands of others and then knew what this man Jesus was all about. And knowing who Jesus was became the starting place for Gillian’s journey of self-discovery. Oh, that we were all so lucky.

Wouldn’t it be a wonderful thing to start our process of self-discovery over again from a completely Christological perspective? If I could say no other word or know no other thing, Jesus would be more than adequate. His love is more than big enough to envelop my inadequacies and faults, his mercies are genuinely new every morning and his grace is abundant and sufficient. Why can’t I just see myself as His? Why can’t I insistently and passionately pat a portrait of him the way Gillian did and say, “No, this is who I belong to! I am who He says I am. No one else matters. Only Jesus.”

Then I wonder this: What if each one of us who knows that Name Above All Names could use our arms and hands as tools of love the way those teachers did each week. Could we do allow him to so capture our imagination that we would endure rejection, pain and uncertainty in order to tell someone his name? Would we hazard personal injury, whether emotional or physical, in order to be sure someone knows his name? Can we allow ourselves to really know no greater name than Jesus?

Gillian’s birthday party is tonight. She’s seven now. She loves horses, whales, and singing. She has a beautiful solo voice and uses it in church whenever she gets a chance. She still struggles with the social and emotional issues that accompany those on the autism spectrum, but Gillian’s central concept of life is still Jesus. During a discussion about wishing stars a few weeks ago Gillian decided they “aren’t true” because Jesus is in charge of everything, but that it might be okay to think about them. She is Jesus’ girl.

Gillian still prefers to walk around bare-footed. So do I.